Rare diseases, disabilities and “democratic recession”


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It was announced on March 21 the new composition of the National Council for the Rights of Persons with Disabilities (CONADE) for three years (2022-2025). Among the new advisors, representations linked to the universe of rare diseases: Febrararas , AFAG e Associação Brasileira de Síndrome de Williams (ABSW) e Retina Brasil . 

This is the conclusion of a debatable and tumultuous process, which began with the publication of the Decreto nº 10.177, de 16 de dezembro de 2019, which aimed to “recreate CONADE”

On April 11, 2019, a new anti-democratic attack against social participation, with the publication of the Decreto 9.759. This simply extinguished, with a stroke of a pen, ALL collegiate instances of social participation within the scope of the Federal Public Administration.

The sleep of reason produces monsters Goya 1797 1799

The stroke took place on the 100th day of the current government, as if to define a symbolic milestone of its management.

The referred decree defined that from that act, the collegiate instituted by law, by a normative act, or from other collegiate bodies would be extinguished, not affecting those created from January 1, 2019, that is, during the current government itself. Decree No. 9,759/2019 directly reached 2,593 collegiate bodies, 996 of which are linked to federal educational institutions, internal acts of the federal government created 734, and 863 without an identified creation act.

The cuts were expected. Already sworn in, in March 2019, during a dinner with conservative leaders in Washington (USA), the current President of the Republic told guests that the purpose of his government was not “to build things for the Brazilian people, but to deconstruct.” Only after that, according to him, would it be time to start doing something for the country.

At the time, the current president also said that Brazil was moving “towards socialism, towards communism,” but that this process would have been interrupted with his electoral victory.

From the razia caused by Decree 9,759, published in April 2019, 32 advisory councils remained a number representing only 1.2% of the total number of collegiate bodies linked to the federal administration, which began to operate with restrictions determined by the government. The explicit attempt to extinguish the councils and other collegiate bodies was later partially blocked by the STF in court. However, this was not enough to prevent the worsening of the national “democratic recession.”

In December 2021, the publication of Public Notice nº 27/2021 by the Ministry of Women, Family, and Human Rights prevented the effective participation in CONADE of people with disabilities through their representative organizations in a transparent, democratic, and legitimate electoral process.

From the razia caused by Decree 9,759, published in April 2019, 32 advisory councils remained a number representing only 1.2% of the total number of collegiate bodies linked to the federal administration, which began to operate with restrictions determined by the government.

Article 7 established a “selection process” for choosing new board members, which was seen by some civil society organizations as a measure that enshrined an “illegitimate” composition “since its process violates the democratic precepts of free elections” that occurred until 2019.

The determinations contained in Notice No. 27/2021 suppressed, for example, the representation of state and municipal councils, contrary to the deliberations of the III National Conference on the Rights of Persons with Disabilities, held in 2012, approved the expansion of vacancies for these collegiate bodies.

Such changes were also excluded from CONADE, the National Association of Members of the Public Ministry for the Defense of the Rights of Elderly and Disabled Persons (AMPID), a historical member of the Council. The Brazilian Federation of Down Syndrome Associations and the Central Única dos Trabalhadores (CUT), other representative entities that have always been present and active in CONADE, chose not to even participate in the so-called ‘selection process’ in order not to ratify the changes imposed in the CONADE composition format. The Instituto Vidas Raras, with which Febrararas maintains hostile relations, was also suppressed from CONADE, with the “selection process.”

The coup de grace against that democratic and representative CONADE existing before 2019 was delivered on March 21 of this year with the publication of the Decision No. 7/2022/CONADE/SNDPD/MMFDH which declared the final result of the aforementioned “selection process”, for the three-year period 2022-2025.

In the category “Organizations that work in the area of ​​disability due to pathological causes or rare diseases,” the current government selected the Brazilian Federation of Rare Diseases Associations (Febrararas) and Retina Brasil. As for the category “Organizations that work in the area of ​​physical disability,” the Association of Families, Friends, and Carriers of Serious Illnesses (AFAG) and the Federation of Christian Fraternities of People with Disabilities in Brazil (FCD/BR). AFAG and Febrararas have maintained good relations with each other since always.

Repercussions of the decision to “recreate CONADE”

The repercussions of the institution of a “selective process” at CONADE that culminated in the choice of Febrararas to represent the interests of people living with rare diseases, among other measures, were soon felt.

In a note, the National Collective of Workers with Disabilities and the National Secretariat for Social Policies and Human Rights of CUT Brasil criticized the precedent created by the selection process, “which led to the participation of civil society organizations that were not aware of their irresponsibility in accepting the established rules”, contrary to the effective instances of social control, enshrined in the Federal Constitution of the Federative Republic of Brazil, in 1988.

And the note states: “It should be noted that in a democratic state, a body of social control such as the rights councils can only function effectively if it is formed from its collectives, with deliberations from its spheres, from the very population to which it belongs is intended.”

The representation mentioned above of civil society concludes its note with a robust expression of repudiation.

We cannot fail to express our vehement repudiation of this whole process. Workers with disabilities only accept their representation through their effective participation, through their representative organizations, in a transparent, democratic, and legitimate electoral process.

National Collective of Workers with Disabilities and the National Secretariat for Social Policies and Human Rights- CUT Brasil

For the first time, with this controversial “selection process,” the Movement for the Reintegration of People Affected by Leprosy (Morhan), the infectious disease that most generate people with disabilities in Brazil, was left out of the council.

“The process had some vices and errors in the public notice that led to complicated distortions. For example, mixing in the same composition neglected pathologies of high incidence in Brazil, such as leprosy and kidney diseases, which lead to disabilities, with rare diseases. In this way, entities that should have separate vacancies are mixed up to ensure greater scope and representativeness of the council”, diagnosed Artur Custódio, National Coordinator of Morgan.

Artur observes that it was usual in these notices for votes to be parity with the number of vacancies—for example, two vacancies, two votes. According to the public announcement of the “selection process,” two vacancies result from one vote. “This added to the lack of presentation of the entities, their history and electoral platform, favored behind-the-scenes agreements and compositions with little transparency,” he analyzes.

Changing the rules of the game at CONADE by implementing a “selection process” brings to that collegiate representation with no experience in “social participation” and unfamiliar with the governance mechanisms of democratic collectives.

Suppression of social participation and “democratic recession”

Social participation on transparent bases is the cornerstone of democracies worthy of the name.

The so-called “selection process,” now endorsed by Febrararas, AFAG, Retina Brasil, and ABSW, with their participation in CONADE for the 2022-2025 period, is an unequivocal manifestation of the deepening of the “democratic recession” underway in the world and, with quite picturesque in Brazil.

According to Wikipedia, “Democratic recession refers to the decline of liberal democracy or the strength of democratic institutions in countries that previously had a higher level of freedom and democracy. The expression, coined by political scientist Larry Diamond, is analogous to ‘recession economic,’ which refers to a decline in the economy”.

The option of merging, in such a visceral way, the nascent movement of people living with infrequent illnesses with the experienced movement of people with disabilities under the aegis of CONADE is something non-trivial.

In France, for example, people with Spinal Muscular Atrophy and other neuromuscular diseases have chosen not to embrace such cohabitation. A perfect choice, in our view, for what it represented for the creation of new political subjects in the public sphere (people living with rare diseases), invested with an emerging social identity and holders of greater assertiveness in the struggle for their specific agendas. Just look at the results obtained by neuromuscular patients in France.

It is evident and unquestionable that many rare diseases have disabilities. It is not up for debate. What is questioned is the convenience and necessity of such a visceral connection between the two movements in collegiate bodies linked so viscerally to the agendas of people with disabilities.

But it is not just the symbiosis between disability and rare diseases that suggests problems in terms of political strategy. The affiliation of entities representing people with infrequent illnesses, inexperienced in the democratic game, to associations with no republican vocation, such as the current CONADE, is a sure recipe for worsening the “democratic recession.” Notably in a country where rare patients are still second-class citizens.

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